Jacksonville girl turns to art as outlet from illness

Mellie White carries her art supplies and favorite artwork with something close to reverance.

Katie Hansen Kathryn.Hansen@JDNews.com

Mellie White carries her art supplies and favorite artwork with something close to reverance.

Pencils and erasers, her favorite sketches are all bundled safely in a vintage suitcase, as Mellie balances it on one hip gripping it tightly, carrying it “like it’s a bomb,” her mom Melanie White says.

“When I draw at least I can do something right,” Mellie, 14, said. She looked at a drawing of Peter Pan and Wendy flying in front of the moon, comparing its beauty to her stomach: “It’s broken.”

Mellie’s broken stomach is part of her diagnosis of gastroparesis, a condition where the stomach has trouble contracting, leaving food and liquids to either stay in the stomach for long periods of time or get ejected from the body.

Mellie said for her it all started with nausea a year ago. Every time after eating, she would feel nauseous. Then, in December, she started vomiting after every meal.

It has now gotten so severe that she can’t keep down solids or liquids — including even water.

She was diagnosed with a 91-percent paralyzed stomach and has been hospitalized a handful of times since December.

Gastroparesis can be caused by various things, but Mellie’s kind is rare, caused by damage to vagus nerve, which controls the muscles of the stomach, which breaks up the food and move it through the gastrointestinal tract.

“Gastroparesis, your food it sits in your stomach, like sometimes, but it will come up. For some people it will sit there for hours and hours before it comes up, but for me it will come up right after I’m done eating,” Mellie said.

The vagus nerve also controls body temperature and blood pressure, so Mellie has a low body temperaure, in the 95-degree range, and is affected by frequent blacking out, making it necessary that she is constantly accompanied by a chaperone.

Because of her gastroparesis, Mellie has lost 50 to 60 pounds in the last year. Melanie said doctors recently told her she has zero percent body fat — she is literally skin and bones and muscle.

Though she is losing weight because she can’t eat, Mellie said she doesn’t have an appetite, something they consider lucky, because some patients with gastroparesis feel like they are starving to death.

“It’s liveable, but the other things also make life not as normal,” she said. “Sometimes I don’t feel normal, but then someone once told me that I am, and I am normal. I mean, even though I’m sick, I’m normal.”

Mellie said that reminder that she is normal was nice to hear and gave her a new perspective.

However, Melanie said Mellie’s illness has put some things into stark contrast for them.

“You don’t realize how much in life revolves around food,” she said, recalling how badly the rest of the family felt talking about grabbing a bite to eat after Mellie’s diagnosis.

Because Mellie cannot eat or drink, doctors had to find a way to give her body the essential nutrients she needed.

They first tried a feeding tube, but Mellie suffered for months, constantly vomiting everything they fed her.

They also tried a picc line in her arm, feeding nutrients through her blood, but she got an infection.

Now, she has a Total Parenteral Nutrition, or TPN, which is a line that feeds directly into her vena cava in the heart, and for 16 hours a day Mellie is hooked up to a bag of nutrients especially mixed by a pharmacist to give her the nutrients they decide she needs based on labwork taken that week.

The bag either hangs like an IV bag when she’s at home or hides away in a backpack when she’s going mobile, with a battery pumping the nutrients through a long, thin tube up into her chest.

Being unable to eat is not her biggest challenge, Mellie says, it’s being prohibited from regular activities kids her age do.

“It’s hard because I can’t do really what other people can do anymore,” she said. “It’s summer. I can’t swim because of this” — she pointed to the tube coming out of her chest — “and I can’t go outside much.”

Because the line goes directly into her heart, any risk of infection is too dangerous, so Mellie walks in the mall where sweat under the bandage is unlikely to build up and cause infection.

“She can’t go outside and play normally,” Melanie said. “To go out in the heat and then come in the A/C causes moisture under the bandage and can cause infection.”

An infection that would be extremely dangerous considering how close it is to Mellie’s heart.

“Sometimes it just feels like this is my life, I mean I forget what it was like before,” she said, as the TPN made its mechanical clicking noise in the background. “Sometimes I feel like I was just in a dream before.”

The TPN can tire Mellie — who is tiny from losing all her weight and already tired from the illness and the medications she takes to battle the nausea, stomach cramps and a thyroid condition she had before her diagnosis — because the backpack she has to tote around has a large battery inside along with the bag of nutrients.

Melanie said the hardest part for her has been watching Mellie suffer and not being able to do anything about it. Also, the adjustments to their life — sleeping patterns, figuring out how to pay for everything, not only medical bills but the expenses to drive to and from various doctors offices and hospitals — has been stressful.

Recently, Mellie’s father Curtis took a job in Maryland so they could better pay the bills.

But she said Mellie’s smile keeps her going, as does her determination.

“Physically she might be sick, but spiritually she is the wellest person I have ever seen,” Hill said of Mellie, adding that Mellie is full of joy and determination. “She loves church and it’s an inspiriation to a lot of people because of her determination.”

Hill said Mellie has had a great attitude the entire time she’s been ill, even coming to church despite being unwell.

“I find comfort in God and church,” Mellie said.

She also loves to draw, something she’s not formally trained in, but has a talent and passion for. Mellie wants to be an illustrator when she grows up, and she displays her art on a Facebook page at Mellie’s Art.

“She would speak through her art,” Melanie said.

Besides her TPN, Mellie said she feels like a normal girl.

The people in her life — friends, family, her at-home nurse and even some people online who have heard about her struggles and send her encouragement via the internet — keep her grateful.

“Sometimes it’s the only way I can get my mind off things,” she said of talking to her friends on the phone.

Mellie is homeschooled, and always has been, but Melanie said if she had gone to public school before her diagnosis she would most likely would’ve been pulled out after.

Despite her illness, Mellie continues with her schoolwork, though it’s slowgoing sometimes, according to Melanie, who said they have to take breaks for Mellie to rest.

As a way to help the Whites, the church has started a gofundme.com site where anyone can donate to help the Whites with any expenses relating to Mellie’s illness, whether its traveling to the doctor, buying a new bedset which is sterile, or paying for actual medical bills.

“We really felt that we needed to do, we wanted to do something that was ongoing,” Hill said. She said the money is routed to the church, which handles the funds for the Whites.

As of this week, they had raised more than $3,000 for the Whites, with a goal of $5,000. Hill said they would keep raising funds for an undetermined amount of time, especially considering that now Mellie is traveling to Ohio for tests at Nationwide Children’s Hospital.

“That’s going to be a big expense as far as gas and hotels along the way,” Hill said.

The Whites said if anyone can do anything for them, it would be to pray.

They planned to leave today for Ohio and they are scheduled to meet doctors at the hospital July 27. During their time in Ohio, they will be staying at the Ronald McDonald House, according to Melanie. Doctors will run tests to see if she is a good candidate for a gastric pacemaker, which would send messages to the stomach to empty at a certain frequency with electrodes connected to the stomach wall.

If the tests determine she is a good candidate, the Whites will be traveling back and forth to Ohio multiple times in the future. They already make regular trips to Wilmington’s Nunley Clinic and UNC Chapel Hill for GI appointments.

“I’m nervous and excited,” Mellie said, but she and her mother both said they don’t want to get their hopes up. It’s possible even if the procedure works she would still be on TPN a few days a week. “It’s weird to think I’ll have a machine in my stomach.”

But Mellie has plans if the pacemaker works.

“It might not work, but if it does, I could eat again,” she said.

And if she can, she knows exactly what food she will have first: Her sister Grace’s pasta salad.

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Want to help?

Check out Mellie’s art at facebook.com/pages/Mellies-Art/1438165423096342

Help out the Whites with expenses or share their story at gofundme.com/7axhh8

Sign the petition to move forward on the Functional Gastrointestinal and Motility Disorders Research Enhancement Act at petitions.whitehouse.gov/petition/move-forward-and-pass-functional-gastrointestinal-and-motility-disorders-research-enhancement-act-hr/f96nJbZS